guardian article inflammation brains updating of predictions about inflammation”.

[maxistar]

theguardian.com/society/202...

interesting read the connection of our brain and how it can get stuck , fighting an infection that is no longer there, mental health approaches assist us

[Excelsior80]

interesting ... a friend of mine had a terrible shooting pain in her arm that kept her awake in tears and wouldnt go, and her consultant said he thought it might be the brain expecting pain when the original cause had stopped .... he gave a very short course of strong painkilllers to break the circuit and it worked. Sounds similar idea .... Though I always wonder about the confidence of scientists, just because they cant see anything physically wrong doesnt mean there isnt something that we dont know how to find.

[PMRpro Ambassador]

Monty Lyman is mentioned - he has another book, The Painful Truth, which I am currently reading. The concepts of pain and pain relief are complex.

[Excelsior80 in reply to PMRpro]

thank you! On the reading list 🙂

[random901 in reply to Excelsior80]

Ditto!

[Miserere]

Very interesting indeed! Thanks for posting.

[Poppeye]

Very interesting indeed!

One month before I started to develop PMR, I had a major, generalised epileptic seizure, the first since I had one as a child. I have always thought that the seizure and the onset of PMR were coincidence, and yet I have had a niggling suspicion that they might not have been.

Was the seizure a result of inflammation in my brain caused by the early onset of PMR...or did the trauma of the seizure cause the onset of PMR? Who knows...not me.

My MRI head-scan, CT and EEG showed nothing that would indicate epilepsy, but that is not unusual.

As a footnote, my epilepsy is now fully controlled with medication, I have served my year's driving ban, and my PMR has resolved after a fairly short course of Prednisolone...all is well 😀

[PMRpro Ambassador in reply to Poppeye]

How short?

[Poppeye in reply to PMRpro]

8 months.

[PMRpro Ambassador in reply to Poppeye]

I know a few top experts in the field who would say it may not have been the same PMR talked about here. Such a short duration is extremely unusual - but without any definitive diagnostic tests it is impossible to differentiate isn't it.

[Poppeye in reply to PMRpro]

I thought you might say that...

[PMRpro Ambassador in reply to Poppeye]

It isn't my idea though - I did discuss it at length with my rheumy who is at the top of the tree if experts. It does come in all sorts so it IS possible, but it is very unusual.

[Poppeye in reply to PMRpro]

I was diagnosed with, and treated for, PMR by the lead rheumatologist, Dr Stuart Kyle, of my regional hospital, North Devon District Hospital. This forum is for all people with PMR, not just for those with a particular type. My experience of a successful short duration disease and rapid taper are every bit as valid as anyone else's.

[DorsetLady PMRGCAuk volunteer in reply to Poppeye]

Not sure anyone said your experience with PMR isn’t valid… all was said was it’s not the usual referred to on here.

[Poppeye in reply to DorsetLady]

Perhaps it should be. It might explain why doctors are keen to reduce people's exposure to Prednisolone to a minimum as this approach appears to be beneficial in many cases, such as mine.

I have read a number of remarks on this forum which imply that some doctors are not treating their patients correctly by encouraging them to reduce their Prednisolone more quickly.

There must be a reason for this. I would like to suggest that it works well in some cases, perhaps in the majority of cases, I don't know, I don't have the figures...

[PMRpro Ambassador in reply to Poppeye]

It becomes obvious quite quickly when a taper is too fast - the symptoms return. You can reduce the dose at any speed you like if the symptoms DON'T return. And our experience is that those who don't need pred for long are very much a minority.

[Poppeye in reply to PMRpro]

Any data on that?

[PMRpro Ambassador in reply to Poppeye]

"Our experience" suggests to me "observational". As DL points out - we meet the ones having problems.

[DorsetLady PMRGCAuk volunteer in reply to Poppeye]

People who have a relatively easy journey with PMR or GCA are in the minority on this forum -for obvious reasons. If the treatment is working well, then advice from us is not required…patients may read the forum occasionally, but have no reason to seek help.

[Poppeye in reply to DorsetLady]

...I understand. But I feel that the stories of doctors who advise patients to reduce Prednisolone are often criticised as examples of poor practice. It might be helpful for people to understand why this advice has been given. It has been good advice in my case and I suspect it has been in many other cases too. My rheumatologist did tell me that if I felt my symptoms returning, I should not ignore them otherwise I would just end up taking more Prednisone in the long run. I have been lucky. I think doctors are probably trying to do the best for their patients and I would like to stick up for them, I think they get a hard time on this forum.

[DorsetLady PMRGCAuk volunteer in reply to Poppeye]

I think they get a hard time on this forum

Some do for sure , and maybe with good reason. But if you read this forum as often as some of us (who have been on here a long time -PMRpro & myself for about 12years) you’ll find others do get praise..

We do call out the good as well as the not so good.

[PMRpro Ambassador in reply to Poppeye]

Praise is given when praise is due. You have read only a tiny proportion of what is discussed here.

[Polywotsit PMRGCAuk team member in reply to Poppeye]

Hi Poppeye, I think there's definitely something in what you're saying because I've always thought that it's the people who are having difficulties who are most likely to come onto a forum. If you're following a fairly fast taper and coping well with it, why would you feel the need? Unless of course you're getting sick of having to explain your condition to everyone around you who's never heard of it to the point you think you might have made it up...... No, seriously. I knew what I had from the off because my Mom had PMR and I recognised it as soon as I fell ill. However, Mom got off the steroids completely in less than a year and a half, whereas it took me nearly five years. So there must be a proportion of the PMR population who are treated entirely by their GP and have a relatively short time on pred. The problem is that we have zero information about them.

[PMRpro Ambassador in reply to Polywotsit]

"The problem is that we have zero information about them"

That isn't entirely true - it is the GP database that the Keele research is based on.

[Polywotsit PMRGCAuk team member in reply to PMRpro]

Yes you're right. I thought of that just as I posted!

[Poppeye]

More interesting reading about the link between autoinflammatory conditions (PMR gets mentioned) and the brain. Mind you, your brain will need to be in pretty good shape if you are going to understand it...!

medrxiv.org/content/10.1101...

[Tappo]

Very interesting read. Thanks for sharing.